Peninsula teams raise funds for arthritis research

On Saturday, hundreds of Peninsula residents will participate in the annual Jingle Bell Run/Walk to raise funds for arthritis research and advocacy. Leading the fundraisers are Beverly Williams, 49, who was diagnosed with rheumatoid arthritis when she was a 21-year-old senior at Virginia Tech, and Mikayla Bowers, 13, who received her diagnosis of juvenile psoriatic arthritis last December.

Both live with the pain and frustrations of an incurable auto-immune disease. Both are making the best of it. They're among almost 2 million Americans afflicted; another 27 million have the more common osteoarthritis associated with aging.

Mikayla Bowers

Mikayla and her mother, Michelle, remember the day in searing detail: Sept. 27, 2011 was "Back to School" night for Mikayla, then a seventh-grader at Spratley Gifted Center in Hampton. When she came home from school, not only were her hands peeling and bleeding, but also her feet, her face and her chest. They rushed to the emergency room where she was diagnosed with a strep infection and sent home with antibiotics. It would be three months before she returned to school.

In the interim, she found it increasingly difficult to walk. Her knees would give way."It felt like a stabbing in my knees and ankles," she said. Mikayla slept on the floor downstairs, swaddled like an Egyptian mummy, her skin protected by a white, creamy salve she nicknamed "the snot" and then in bandages that had to be changed three times a day. "They would stick to my skin," she said. Doctors thought it might be scarlet fever or psoriasis; she tried different antibiotics and steroids. Her joints started swelling. She couldn't write. She was sensitive to temperature changes and couldn't touch anything hot or cold.

In December, on her first visit to a pediatric rheumatologist at Children's Hospital of the King's Daughters in Norfolk, she received the diagnosis of juvenile psoriatic arthritis. "It's like rheumatoid arthritis, but more," said Michelle. Immediately, she started on methotrexate injections — administered by Michelle once a week — with lidocaine for the pain.

In the summer, Mikayla attended Camp JRA, a camp in Pennsylvania for children with arthritis. There, she took a class on how to swallow pills and inject herself. She also learned how to take the methotrexate without pain medication.

The family's insurance wouldn't cover the drug Enbrel that makes her feel better, but now the Enbrel Encourage Foundation supplies it for her. Her insurance covered physical therapy for 30 sessions, but she went through those by April. "I really need them," she said, slumping in a chair over a heating pad for lower back pain. She's looking forward to resuming them in January.

Meanwhile, despite the constant pain, she loves to do elaborate Origami designs, and would love to write more. She wears ring splints to help her write, and the school system has supplied her with an iPad as an accommodation.

Mikayla must take multiple medications, including low-dose steroids, and she uses several creams to help her skin. "It feels like my flesh is ripping when I move my face," she said. She's also developed allergies to seafood and nuts, but hasn't lost her sense of humor. "I think I'm allergic to nature – trees and grass, and mugwort, it sounds like something from Harry Potter," Mikayla quipped. She reserves a lot of her energy for taking cheerful swipes at 10-year-old brother, Joey.

She has gathered 32 team members, including friends, family, teachers and guidance counselors, to join her in the Jingle Bell Walk. "She's got a lot of support. That's really neat," said Michelle. "I try not to complain," added Mikayla.

Beverly Williams

Rheumatoid arthritis has destroyed just about all the joints in Beverly Williams' body. The 49-year-old Yorktown resident finally went on disability in 2010, a decade after doctors said she should and 15 years after she had her first elbow replacement operation. Since then, she has endured more than a dozen surgeries on her knees, ankles, hips, shoulders and thyroid. She's been off all weight-bearing for months at a time and been confined to a wheel chair on several occasions. "It's a crippling disease. It makes it almost impossible to do things," she said.

Through it all she has maintained a cheerful demeanor, working to support other arthritis sufferers, raising money for the cause, and spending time with family and friends. Her mother, Kitty Williams, who often takes on the role of primary caregiver, attributes Beverly's resilience to her sunny attitude and her strong network of friends. "They call us [she and her husband, Jim] 'mum and dad,'" she said. "There's never been any 'why us'? We were always very optimistic and did a lot of laughing and engaging each other. I can honestly say I have never seen her cry. It's never a pity party."